#CripLit chat Sunday 10/28: Resistance and Hope
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Image description: Graphic with a yellow background and text in black that reads “#CripLit TwitterChat New Resistance and Hope, October 28, 2018, 4 pm Pacific/ 5 pm Mountain/ 6 pm Central/ 7 pm Eastern/ 4 pm Pacific, Co-hosts @Nicolaz & @DisVisibility. Details: DisabilityVisibilityProject.com.” On the left is an illustration of a clenched fist and on the right is an illustration of an ink pen. Both illustrations in black.
Resistance and Hope
#CripLit Twitter Chat
Sunday, October 28, 2018
4 pm Pacific/ 7 pm Eastern
You are invited to the thirteenth #CripLit chat co-hosted by novelist Nicola Griffith and Alice Wong of the Disability Visibility Project®. This chat is timed to celebrate the publication of Resistance and Hope, an anthology of essays by disabled people, edited by Alice Wong. But the questions are for all of us—all disabled writers are welcome. We want a good conversation about our community’s values, joys, and struggles around resistance and hope!
Alice Wong
Alice Wong is a disability activist, media maker, and consultant. She is the Founder and Director of the Disability Visibility Project® (DVP), a community partnership with StoryCorps and an online community dedicated to recording, amplifying, and sharing disability stories and culture created in 2014. Alice is also a co-partner in DisabledWriters.com, a resource to help editors connect with disabled writers and journalists, and #CripTheVote, a nonpartisan online movement encouraging the political participation of disabled people.
Alice’s areas of interest are popular culture, media, politics, disability issues, Medicaid policies and programs, storytelling, social media, and activism. She has been published in Eater, Bitch Media, Teen Vogue, New York Times, Transom and Rooted in Rights.
From 2013 to 2015 Alice served as a member of the National Council on Disability, an appointment by President Barack Obama. She has a master’s in medical sociology and worked at the University of California, San Francisco as a Staff Research Associate for 15 years. Alice launched the Disability Visibility podcast in September 2017 and currently works as an independent research consultant as part of her side hustle.
(Bio adapted from Disability Visibility Project.)
Nicola Griffith
Nicola Griffith is the founder and, with Alice Wong, the co-partner of #CripLit. She was born and brought up in Yorkshire, England, where she earned her beer money teaching women’s self-defense, fronting a band, and arm-wrestling in bars, before discovering writing and moving to the US.
After her 1993 diagnosis of multiple sclerosis she focused on writing. Her novels are Ammonite, Slow River, The Blue Place, Stay, Always, Hild, and So Lucky. She is the co-editor of the BENDING THE LANDSCAPE series of original queer fiction. Her essays and short fiction have appeared in a variety of journals, including Nature, New Scientist, Los Angeles Review of Books, LitHub, and Out. Her work has won, among others, the Washington State Book Award, the Tiptree, Nebula, and World Fantasy Awards, the Premio Italia, and Lambda Literary Award (six times), and is translated into 13 languages.
She has served as a Trustee of the Multiple Sclerosis Association and the Lambda Literary Foundation. She is now a dual US/UK citizen, holds a PhD from Anglia Ruskin University, and lives in Seattle with her wife, the writer Kelley Eskridge.
(Bio adapted from Nicola Griffith’s website.)
Additional Links
“Stories for Us and By Us,” by Eleanor J Bader, Think Progress, October 2, 2018.
“An intensely human tale of illness, fear, and fighting back,” by Joanne Rixon, Seattle Times, June 24, 2018
Goodreads Review, by Rosalie Morales, Goodreads, October 2, 2018
Q&A with Alice Wong, Books Reviews With Deborah Kalb, October 8, 2018
How to Participate
Follow @DisVisibility and @nicolaz on Twitter for updates.
When it’s time, search #CripLit on Twitter for the series of live tweets under the ‘Latest’ tab for the full conversation.
If you might be overwhelmed by the volume of tweets and only want to see the chat’s questions so you can respond to them, check @DisVisibility’s account. Each question will tweeted 6-8 minutes apart.
Check out this explanation of how to participate in a twitter chat by Ruti Regan: https://storify.com/RutiRegan/examplechat
Check out this captioned #ASL explanation of how to participate in a chat by @behearddc
Introductory Tweets and Questions for 5/19 Chat
Welcome to the #CripLit chat to celebrate Resistance and Hope. This chat is co-hosted by @nicolaz & @disvisibility. Please remember to use the #CripLit hashtag when you tweet.
If you respond to a question such as Q1, your tweet should follow this format: “A1 [your message] #CripLit”
Q1 Please introduce yourself and share your journey to writing, and writing about resistance in particular. #CripLit
Q2 Tell us about some of your resistance writing. What or who are you resisting? #CripLit
Q3 As a disabled/sick/chronically ill writer, who or what sustains you and gives you hope? #CripLit
Q4 If your resistance writing is published and out in the world, how do you feel? Would you do it again? Why? #CripLit
Q5 What impact has this work had on your writing and/or activism? What are you working on now? #CripLit
Q6 What advice do you have for other disabled writers about editing or writing about resistance? #CripLit
Q7 What new anthologies by/about disabled writers would you like to see? Who and what is missing when it comes to diversity and different perspectives? #CripLit
Q8 Where should we look to discover the new voices of #CripLit, and how can we help each other?
Q9 What would you like to see next for disability literature? How can we increase its reach and visibility—how can we spread our crip wisdom to the people? #CripLit
Thank you for joining our #CripLit chat. Please continue the conversation!
A recap of this chat will be up tomorrow. Check the #CripLit hashtag. Feel free to contact @DisVisibility and @nicolaz with any ideas/feedback 
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I'm glad you survived.Michael wrote: "MRSA
MICHAEL JAMES MCDANIEL
Few people were as physically active as I was. I was a strong swimmer all my life until 1999. I was a superlative athlete in football, rugby, bicycling, power-lifting, ..."
MICHAEL JAMES MCDANIEL
Few people were as physically active as I was. I was a strong swimmer all my life until 1999. I was a superlative athlete in football, rugby, bicycling, power-lifting, mountaineering, judo, et al. Then it all came crashing down. An old woman backed her car against me in a Publix parking lot crushing me against my Suburban. My friend Dr. Bob found a very qualified surgeon for a cervical problem I had at Shands, when he saw me after the surgery he saw me walk and said, "tell me about your lumbar problem". He said I can fix that and I was back a month later to let him fix it. Shands has superlative surgical teams. The overall cleanliness of the hospital is a different matter. My 6-hour operation took 12 hours. When I finally awoke I was looking forward to a new lease on an active life. We went home to Clearwater. After a few days of in-home nursing care, I became more and more painful, temperature, draining pus. I went to a neurosurgeon at Morton Plant and he admitted me. They took x-rays, did blood tests and determined I had a nasty MRSA infection. No one wanted to work on a patient damaged at another hospital so we drove back to Shands in Gainesville, FL. They admitted me and scheduled me for surgery the next morning.
The next morning they came into my room with a gurney to take me down to surgery. As usual, I did not want them to lift me onto the gurney and stood to put myself on it. Suddenly my back "snapped" and I fell into a heap on the floor screaming in pain all the way down to the surgical sweet and until they finally knocked me down with medications. My 8 hours surgery was done and I was in recovery unconscious for 12 more hours. I had some memorable dreams. I awoke one morning well after one of my surgeries and looked down and there was my scrotum the size of a kickball. I did not see my old friend Mr. Sausage. I asked the nurse, "they didn't cut it off, did they?" to which she replied, "no, it's in there!".
I was at Shands for a month and had 5 more surgeries to deal with the infection. I was never able to eradicate the infection and eventually, they sent me back to Morton Plant in Clearwater. After a week I was transferred to their long care facility in another building where I was resident for several months. when I was finally discharged from there I went home and they had a nurse come in daily to infuse me with antibiotics which did not totally defeat the infection but seemed to hold it in stasis. My parents told my wife, Margee that it was too burdensome for her to visit me every day and not to feel she needed to. I will never understand that!
After a while, my insurance company didn't want to pay for my at home infusions and required me to go to Morton Plant every other day for the infusions and I used the free patient bus provided by Morton Plant. The physical moving to the hospital every other day was VERY painful and uncomfortable for me. My friend, Dr.Bob who had an oncology practice there arranged for me to go to his infusion clinic with his cancer patients. After the first few visits, some of the patients asked me what kind of cancer I was suffering from, when I told them I did not have cancer they were clearly relieved. One told me they were all afraid they would get as bad (suffering) as me and it eased their minds to know I was not a cancer patient.
After I contracted the MRSA infection and was in and out of the hospital for two years, I was told by my neurologist and neurosurgeon, that I would not be able to walk unassisted and there was nothing left for a surgeon to do to improve my function. Over the next three or four years every time I walked into their offices (with a cane) they were surprised. I did suffer rather extensive and constant pain mainly in and emanating from my spine. After leaving the hospitals I was taken off injectable morphine and placed on muscle relaxers and strong opioids. I found myself zoned out unable to write or read a book. Only magazine articles and fairly simple mainstream ones, at that, submitted to my study.
I tried to go back to the gym but found my pain too disabling to permit me to work out. Finally, a psychiatrist put me on a “pain” dosage of Cymbalta (duloxetine). I was less affected by my pain then and no longer needed my opioids so I quit them. Dr. Dimarco wanted to put me in the hospital to take me off opioids but I said no and stayed in my room for 10 days and then I was a civil human being again. The Cymbalta didn’t stop the pain but it made it more tolerable. I have learned that there are many facets to pain. The intensity isn’t reduced but its significance and distractive power are reduced. I grimace a lot and people are often asking “are you all right.” My answer is always, “No I’m not.” A confused moment passes, and they realize the foolishness of the question.
If not for my excellent condition and strength at the outset I would not have survived this. If not for gym workouts now I would be much worse than I am.